go for the threading, stay for the insults?

So I went to the salon yesterday. I wanted to get my eyebrows threaded. No big deal. <15 minutes in and out. I was excited. It was the first day in over a month that I had the energy – and the time – to go take care of it. I may not be able to control the weight gain, but at least I can keep up with these little things that keep me from feeling completely un-presentable. I know, I know, I need to get over the weight issues. I’m working on it, I promise.

The salonist (?), however, felt a need to comment not only on the fact that I’d let my eyebrows get unruly, but also on the fact that I should really be taking care of myself better, “[I mean] look how much weight you’ve gained. A girl your age shouldn’t be your size. You need a good figure to get around in this world […(I tuned her out here as I tried to count backwards from 10)].”

Counting backwards from 10 didn’t work. I was livid. I couldn’t figure out if I should cry or scream at her. Had I a more violent disposition, I probably would have been inclined to slap her. It was just so RUDE! I was well aware of how my eyebrows looked, and that comment was directly related to why I was there. To her, I’m sure it seemed like I couldn’t take a quick 15 minute trip, so OK, fine, make a comment. After all, her money comes from how often people visit right?

Still, there was really no excuse for the weight comment. It was not directly related to any services they provide. Moreover, it was unnecessary. I didn’t come in for a weight consult or a beauty consult of any kind. It’s not like I don’t know that I’ve gained weight, or how our society views fit people versus out-of-shape people, after all. I realize that perhaps it’s my own fault for thinking I could separate the concept of vain beauty in terms of things like eyebrows from body image issues … but she could have kept her opinion to herself, right?

Finally, I let loose with a (tone-controlled) ear-lashing. I informed her in no unclear words that I am, in fact, quite ill and I come here as often as I can work up the energy to do so, but frankly my health is more important than my eyebrows. I told her that she should try being so ill that she can’t get out of bed some days, then add on a boatload of meds that all cause her to gain weight and see how what kind of shape she’s in. She looked confused, but apologized profusely.

I left the salon with the realization that while I could elicit an apology, and, perhaps, some more polite behaviour in the future, I couldn’t really make her understand why I was so upset because it was so far outside the realm of her own experiences. On the other hand, would it have been better to leave well enough alone and just assume she wouldn’t get it anyway? 

“Home Sick” is NOT the Same As “Vacation Day” !!!! (gack.)

So it’s spring break week. The entire point of spring break is to go out and have fun and relax right? Not for me. I get to spend my spring break making up all the exams that I missed. It sucks. I mean, what could I possibly need more than a week of rest and recuperation? (Well, other than a cure, of course.) Still, it makes sense to take them spread out over this break, since this way I can focus on just one exam at a time instead of trying to review the material for the makeup exam and learn the new information for the next one at the same time…

I’ve been working hard to try and keep people’s insensitive comments from getting to me. I really have. Sometimes I just can’t manage it though. This is a chat convo with a classmate from earlier today. The only thing I edited was to take out the names:

Classmate: hey! hows your break going?

Me: not too bad. trying to catch up on sleep – and exams i missed… hows yours been?

Classmate: ohhh, youre making up exams?

Me: yeah. missed a few when i was out sick, so im taking them over break. kinda sucks to be studying over break, but oh well…

Classmate: but you already got the days off that you were sick! so those were vacation days and these are class days! LOL!

Me: ummm, actually, i was home *sick* so those weren’t vacation days

Classmate: but vacation is for sleeping. and you slept on days you were home sick right? so that’s vacation.

Me: so you would say sleeping in on spring break day is the same as being sick with the flu?

Classmate: well, no, not for ME.. but you spend so many days in bed it’s the same thing right?

At that point I sent my classmate the link to the Spoon Theory, and said that I hoped it would help explain better. Who knows if my classmate will read it, but hey it was worth a try.  I feel like it was kind of a cop out versus explaining, but I was seeing red rage and I didn’t want to say something offensive that I’d regret. I guess maybe ill try to follow up on it again after break and try to explain myself. It’s hard enough to miss class without people thinking that I’m not here because I’m on vacation… 

You Can't Always Get What You Want

If there’s one thing that lupus teaches you, it’s that. It stops you from doing the exercise you want, it keeps you from the Peace Corps, it limits your career choices, your hobby choices, your (usable/enjoyable) free-time, and, sometimes, your friend choices. Lately, I’ve come to consider these limitations just more symptoms of the disease.

I went back to the doctor yesterday. He raised the methotrexate dose AND reset the prednisone taper back to 30mg. I had worked my way all the way back down to 9mg, so that was quite a blow. I get so jittery at 30mg! Sigh. On the plus side, at least he doesn’t think I need to take a break from school…

“ … all you can do is try to know who your friends are before you head off to the war … ” - Regina Spektor, “The Call”

In theory, it’s a nice sentiment, right? But if you’re fighting a chronic disease, it really doesn’t work that way. It seems to me that you find out who your friends are when you’re about six months into a bad flare up. This may seem counterintuitive, but bear with me for a minute. When a flare up first hits, people can often tell that you are distinctly ill. There is a significant difference between remission (or, at least, under control lupus) and the onset of a flare up… people worry. They ask after your heath, if they can help with anything, and so on and so forth everyone is very understanding and sweet. They understand that you’re ill – if you haven’t been too ill for too long, it’s not different from a bad bout of the flu or something that they can at least vaguely relate to.

But then you never seem to get any better. As the doctors mess with your medications. As you battle daily with the flare up symptoms, the side effects of the increased medications, and the frustration and depression that inevitably come hand-in-hand with such debilitation ad nauseum (from the duration not the meds!) ad infinitum. After awhile people just don’t understand anymore, try as they might. They don’t know what it’s like to suffer through that. They can try to imagine, but let’s face it – is it anything like what you would have guessed before you were diagnosed? You probably wouldn’t have even come close. Plus, as you get further into a flare up, some of the symptoms decrease a little, and you ramp up your tolerance so you can get through each day. The problem is, you’re often back into the dreaded “but you don’t look sick!!” zone. Don’t get me wrong. I don’t mean to say that people lose interest, or that they choose to be less supportive or anything of the sort. I think they run out of things to say. They don’t know what they can do to be helpful anymore, so they back off. It doesn’t help that you have good days and bad days – how can they even tell if you’re ill or not or what the heck is going on?

Here’s the real kicker, though. It’s not just that they wander away. You tend to disappear from their lives. No longer do you have the energy or the ability to make it out dancing and partying every weekend. And with all the time you need to spend in bed and nursing your joints, etc, etc, etc, you really need all your awake time (even more, let’s face it) to get the work done that needs to get done every day. So there go the brunches, the after work drinks, the long coffee shop chats. How many times can you decline an invitation before people stop inviting you?

Well, maybe there isn’t a very good answer for that… but at the end of the day it depends on your friends. The friends that are worth keeping around haven’t disappeared when you start to transition back into the outside world. They’re the ones that checked in on you from time to time, or, at least, welcomed you back with open arms - even if you seemed to appear and then vanish again as the flare up roller-coaster-ed around. A true friend is still a friend be it 6 days or 6 months later.

As I make my own way slowly back into the real world, I’m discovering that many of my friends have kind of phased me out. Now I realize that they wouldn’t do this on purpose, but the fact remains that conversations are now awkward. And if I want to join the fun, I have to invite myself along. It’s really frustrating to finally reach a point when you have time and energy again only to discover that nobody seems to remember you exist anymore… With my family far away, my friends were all I had. Turns out that wasn’t really the case. It’s undeniably a pretty crappy situation. Not having any friends definitely does not make this disease easier. You need supportive people. So thanks to my readers, because it helps more than I can tell you to know you are out there! … but it doesn’t change the fact that I’m sitting home alone on a Friday night.

But let me clarify, the point of this entry wasn’t (entirely) to gripe about that fact, it was to point out that it’s easy to dwell on the many, many negative aspects of a chronic disease. But there is an elusive benefit that you might not realize. I certainly didn’t. There’s no better way to know who truly cares about you than to actually need them to care. A good friend won’t let your disease come between you. You may not know who your friends are going into the battle, but definitely will by the time you come back out.

Whatever Happened to "just the flu" ??

[Disclaimer: Anyone in the public health world would point out that there is no such thing as “just the flu,” and that the next major flu pandemic could happen at any time. Duly noted.]

The flu has been going around my class. Now, most people who caught it were out for a day or two. They hydrated. They slept. They came back renewed and ready to face the world. Meanwhile, I was out sick for a week. And I’m still sick. And all I’ve done is sleep. And sleep. And sleep. My joints have been so swollen this was the first time I managed to so much as type.

I know this post is going to sound like I’m whining, but it I am just so frustrated with (and since I promised honesty – jealous about) how unbelievably ill I am when everyone else quickly recovered. The virus just amplified the flare up symptoms. I made it to school today because I hate missing out but by the end of the day I had to collapse into bed. I didn’t manage to change or get under the covers. And to top it off, my professor tracked me down and asked why I did so badly on the quiz today. I told him that I was out with the flu, and his response was an arched eyebrow followed by, “Ah, yes. Quite. ... I thought that was going around LAST week.”